REMEMBERto bookmark this site so that you can
return ! Last Update
10/08/07Tourette Syndrome—Now What?
Raising awareness about the full spectrum of Tourette's disorder, with support
and accurate information based on the latest research.TSNW •
TSNowWhat •
TouretteNowWhat •
Tourette Syndrome Now What?

Tourette's
Syndrome Message Board and Blog! (An online Tourette syndrome support
group where you can meet adults, families and people with Tourette's Syndrome,
keep up with the latest research, learn how to cope with Tourette's, and post
your questions about Tourette's.)

Click on the links below for recent
updates, latest research on Tourette's, and current Tourette's
information

"Because there are so few anatomic (by
imaging) or neurobehavioral abnormalities associated with pure Tourette
syndrome, it is important to inform the parents of these children, who
comprise 40% of all children with Tourette syndrome, that their future is
not burdened with the same issues as those of the remaining 60% of children
who have comorbid ADHD with Tourette syndrome." Martha Bridge Denckla, MD. "Attention-Deficit
Hyperactivity Disorder (ADHD) Comorbidity: A Case of "Pure" Tourette
Syndrome?" J Child Neurol.
2006 Aug;21(8):701-3.

If
you’re new to Tourette Syndrome, please read this section carefully; these terms
and concepts will help
you better interpret the rest of what you will read as you learn about Tourette's.

Tourette Syndrome is a neurobiological condition resulting in
motor and vocal tics. Some common tics include coughing, throat clearing,
sniffing, blinking, shoulder shrugging, arm thrusts, or neck
stretching. Some
researchers believe that a subtype of OCD (obsessive-compulsive disorder) may be
genetically linked to Tourette's. There’s not too much else that has been conclusively
shown to be "part of" Tourette Syndrome. A lot of literature about Tourette's is
misleading, and sorting it all out can be very difficult. The following topics, concepts, clarifications and
definitions may be useful as you read those sites about Tourette Syndrome.

Terms

A spectrum disorderoccurs along a continuum, from severe to mild and a syndrome
is a medical condition that is diagnosed based on a history of a collection of
symptoms rather than via a specific medical test. There is currently no
clinical means of medically testing for Tourette's: it is diagnosed based
on a history of tics which wax and wane and had a childhood onset, and after
ruling out other conditions which might cause tourettism or other
secondary causes of tics. Tourette's syndrome is a
spectrum disorder, with VERY few people falling in the severe range. Claims that Tourette's
is on the "same spectrum" as autism (e.g.; Pervasive Developmental
Disorders), ADHD (attention deficit/hyperactivity disorder), bipolar
(manic-depression), etc. are controversial and not accepted by all researchers. Milder
expressions of Tourette Syndrome are probably less likely to be recognized
and/or diagnosed, and a recent research suggests that the vast majority
of Tourette's goes undetected. Back
to Top

Comorbid
refers to a medical condition that is present along with another medical
condition, and doesn’t necessarily mean their causes are related or one leads
to the other, etc. Some people mistakenly interpret the term comorbid to mean
separate medical conditions that are related to the same cause or genetically
linked. Back
to Top

Ascertainmentis the way persons with a trait are selected or
found for genetic or medical studies and biasis a difference between the estimated and true
value in a statistical sample. Ascertainment bias and referral bias refer to
inaccurate estimates because the study was biased, often by the presence of
another condition. If you surveyed all persons referred to a psychiatric clinic
for Tourette Syndrome, you would find a high rate of psychiatric disorders in Tourette's
patients (the fact that the survey was done in a psychiatric clinic
rather than in the
general population would bias the results.) Since other conditions are likely to be what brought the person with Tourette's to the
clinic to begin with, ascertainment bias caused distorted representations of
those conditions in patients with Tourette syndrome. Comorbidity rates may be
overstated in clinical samples of Tourette syndrome patients because other
conditions may be what caused the difficulty that brought the person with tics to the clinic to begin with.In conclusion, don't let reports of high comorbidity and/or
psychopathology in clinical samples of persons with Tourette's overly influence you, and
learn to read the studies carefully and understand the study population. Back to Top

A clinical samplerefers to a study done on patients from aclinical population
— patients from a clinic or hospital. This can be a good way to conduct
research, but since persons who are in worse shape or have multiple diagnoses
are more likely to come to a specialty clinic, these samples may reflect only
the worst-case scenario. You must carefully interpret EVERY statement that
includes wording such as who seek medical attention or in clinical
samples. NOTICE the population sample that the study is based upon.
Some
statements may not reflect the type of Tourette Syndrome more likely to be diagnosed today and
may be affected by ascertainment bias. Be even more wary of statements like
"50% of persons with Tourette's have ADHD." The more correct statement would
begin with, "In clinical populations, 50% ..."
Back to Top

Epidemiological study
or a broad-based population samplerefers to a study done on patients obtained from
an entire population, for example, all of the third grade children in a certain
school district. There have been very few studies of this type on
Tourette's syndrome subjects.
This
type of research has some drawbacks, but as long as Tourette's remains a highly underdetected and misdiagnosed condition, clinical samples may not reflect the
same trends that one would find in a broad-based population study. Those persons
who are coping well or who don’t have comorbid conditions or complicating
environmental factors may be more likely to be identified in broader
epidemiological studies. For instance, Robertson's study in the U.K.
looked at all children in an entire school district of a certain age, and found
that Tourette syndrome was vastly under-detected. Back to Top

DSM-III-R or DSM-IV
or DSM-IV-TR is the Diagnostic and Statistical Manual of Mental Disorders, the reference
still used to diagnose Tourette's Disorder in the U.S. DSM-IV added the "significant
distress" criterion, meaning that the fourth revision considered that you don’t have Tourette's
disorder, even if
you meet all the other criteria, unless you have "significant
distress." This means that any study using DSM-IV
diagnostic criteria may only reflect more severe Tourette's. The "significant distress"
criterion was dropped from the most current revision, DSM-IV-TR. Furthermore, chronic
tics are thought by many Tourette syndrome researchers to be due to the same underlying,
genetic mechanism as Tourette's, so distinguishing between Tourette's and chronic tic disorders
may be useful only for research purposes. (See Classifications of Tic
Disorders on Tourette Syndrome Links page.) Back to Top

Tourette Syndrome Plusis a term coined by Leslie Packer, Ph.D., referring to patients who
have Tourette Syndrome plus
features of one or more other disorders. The term was intended to help people remember that not
everything may be a tic of Tourette's. There may be other comorbid problems that are
actually impacting more than the Tourette Syndrome. It was intended as
shorthand for communications purposes, but newcomers may not be aware that many
statements about TS+ may not apply to most persons with Tourette's, or that some of these other disorders are not
always or often present in persons with Tourette syndrome.
Care should be taken to use and interpret
the term as Leslie intended. Many of the difficulties associated with TS+
probably arise not because of the Tourette's, but because of the other conditions which
may also be present in some cases. For instance, when considering the
specific impairment or issues of any particular individual, it may be more
useful to think in terms of ADHD plus tics, or bipolar plus tics, rather than
"Tourette syndrome plus" -- terminology which rolls all behaviors under the Tourette's
umbrella may be misleading in terms of treatment and attention to the issues at
hand, and may lead to further misunderstanding about the nature of the core
condition of Tourette syndrome. It is unfortunate that the terminology "TS
+" may lead some to believe that the other issues are secondary to Tourette's,
rather than considering the terminology, for example, "ADHD+" or
"bipolar+" when tics are also present with these conditions. The
other conditions are often far more impairing than the tics, and should take
treatment priority; hence, rolling symptoms into a Tourette's spectrum umbrella
is misleading. Back
to Top

Concepts

The terms provided above will help you use your own knowledge to better
interpret the Tourette Syndrome literature. Some of the more common concepts, misconceptions and
inaccurate generalizations are discussed here:

Comorbid ConditionsThose with more comorbidities (ADHD, OCD and
others) are more likely to come to clinical attention and receive a Tourette's
diagnosis. As awareness of Tourette Syndrome improves and Tourette's becomes increasingly more
detected, our views on comorbidity may change. Until there are epidemiological
studies on the rates of comorbidity in TS, view all numbers with skepticism,
since rates quoted are generally based on clinical samples only. The comorbid
presence of ADHD makes it far more likely that Tourette's will be diagnosed, so rates of
ADHD comorbidity may be overstated. Don’t assume ADHD (or any other condition)
will present in your child or your case and don’t fail to carefully consider
other sources of what appear to be attentional issues, such as boredom, tic
suppression, depression, bipolar disorder, etc. Also, keep in mind that
comorbid conditions don't mean life is going to be awful ! The distinction
is made between "TS only" and "TS+" so that you can be sure to get to the
source of any difficulties which may arise and get the right diagnosis and,
hopefully, the right treatment.

"The increased prevalence of these
disorders in TS clinic populations (and perhaps that of ADHD as well) therefore
most likely reflects a clinic ascertainment bias in which children who have
multiple disorders are more likely to present to clinic than are children who
have just a single illness. Children who happen by chance
to have both tics and disruptive behaviors, for example, may come to clinical
attention primarily because of their behavioral disruption. At the time of
clinic evaluation, tics are noticed, TS is diagnosed, and the behavioral
disruption is erroneously attributed to TS. The treatment implication here
is that the child's comorbid illnesses, not the tics, are often what require
treatment." Peterson and Cohen,
The Treatment of Tourette's Syndrome: Multimodal, Developmental
Intervention. Presented at a closed symposium held in New Orleans,
Louisiana on April 12, 1996. No longer online at psychiatrist.com/psychosis/worldwide/current/tourettes.htm

Learning Disabilities
in Tourette's Many
recent studies have shown that the presence of learning disabilities in
clinical populations of persons with Tourette's seems to be largely explained by the
presence of comorbid ADHD.

"A
new study suggests that AD/HD may, in fact, account for much of the impairment
seen in patients with tic disorder ... children in both groups (tics plus
AD/HD and AD/HD alone) had an almost identical patterns of cognitive
impairment, lower academic achievement, arithmetic learning disabilities and
impairment in global assessment of functioning ratings ... Dr. Spencer
emphasized that treatment of AD/HD may be sufficient in those patients with
tics plus AD/HD and there may be no need to treat specifically for tics.
Only
rarely do tics cause impairments and they tend to improve with time even in
the absence of pharmacotherapy, he said."From
"DG DISPATCH - AACAP: AD/HD A Major Factor In Tic Disorder," Lara
Pullen, Chicago, IL, October 27, 1999 (see TS Links):

Comorbid ADHD makes it more likely that a person with tics will come to
clinical attention, so the rate of learning disabilities in all persons with Tourette
Syndrome
is probably overstated in the literature and may be no higher than in the
general population. However, visuomotor integration deficits resulting in poor
handwriting may be associated with Tourette's and should be tested for in all children
with Tourette Syndrome.

Furthermore, OCD can also cause academic difficulties, but in a different
way. Some examples are perseveration, perfectionism, relentless editing
and erasing/correcting of work, and the inability to prioritize, as in cleaning
and organizing one's desk rather than actually doing the work. But,
as Tom Benedict points out, "These same things, turned around, can be seen as
strengths if not taken to extreme. Perseveration becomes, 'Gets the job
done, no matter what.' Perfectionism becomes, 'First drafts look like
final drafts.' And so long as it doesn't interfere with other work, being
organized isn't a bad trait." For help with academic issues, see
Leslie Packer's TS "Plus" website. Back
to Top

Classroom Accommodations There has been very little research in this area,
yet one encounters broad statements and recommendations, sometimes based only on
personal experience with small or biased samples. These recommendations
may be based only on samples of children with multiple diagnoses or may have
more to do with ADHD than with TS/OCD. Accommodations
based on clinical observations may not benefit all children with Tourette's: I have
encountered many often-repeated suggestions that would be highly
counterproductive for my sons. Do not assume that suggested accommodations are
ALL in your child’s best interest, or that you should attempt to apply them
all. You know your child best: does the suggestion really make sense for
him/her? Don’t assume, rather give careful thought to suggested accommodations
given your child’s diagnosis. Unnecessarily sending any child the message the
he or she is not capable may do more long term harm than good, and some children
may come up with surprisingly good coping mechanisms when left to their own
devices. Back
to Top

The "2/3 rule,"
put forth by the book, Teaching the Tiger, and at Tourette Syndrome
Association
conferences,is an example of the kinds of issues that affect
much of the Tourette's literature and have extended beyond the literature into popular
use. From p. 39 of Teaching the Tiger by Marilyn
Dornbush and Sherry Pruitt, Hope Press, 1995,

"When designing modifications, clinical experience suggests that the
student's cognitive, behavioral, social and emotional age equivalents are
approximately 2/3 the student's chronological age.* For example, a
neurologically-impaired 12-year old may have a functional age of 8." *
Barkley, R. A. New ways of looking at ADHD. (Lecture, 1991). Third
Annual CH.A.D.D. Conference on Attention Deficit Disorders, Washington, D.C.

There is no print or peer-reviewed, medical journal reference for
verification of the content of this information; there’s no clear
indication of what population Barkley, an ADHD expert, was referring to;
and there are no indications that he was referring to children with Tourette's
at all. But this "rule," implying a global level of developmental delay in
a well-known book ostensibly about Tourette Syndrome, has been put forward at
Tourette Syndrome Association conferences and has become generalized to ALL
children with Tourette's, something that is not backed up by any research!
The statement should be referenced, qualified and used more carefully.
This "rule" in fact, was explained by Barkley in a later paper published at
SchwabLearning.com, where it was clear that he was speaking about delays found
in AD/HD. Simply stated, there is no evidence that the
majority of children with Tourette Syndrome have severe hyperactivity or global
delays in multiple domains of functioning, as was implied by Dornbush and Pruitt. Authors fail to consider
ALL children with Tourette Syndrome when they make these types of statements in print or at
conferences. Statements that
apply to some children with multiple diagnoses may not be applicable to the
majority of children with Tourette's, given what we now know about ascertainment bias
and the probable rates of undiagnosed Tourette Syndrome. Be aware of such frequent,
sweeping generalizations often heard at TS conferences, and insist that speakers
clarify their populations and discuss ALL persons with Tourette's rather than only those
with TS/ADHD. Back
to Top

Other ConditionsThe presence of comorbid mood or anxiety disorders
(such as bipolar disorder) or developmental disorders (autims, PDD, Asperger’s) can
alter the course and severity of Tourette Syndrome, making for a rougher ride with Tourette's. Also, it can be very
difficult to distinguish between ADHD and childhood bipolar, and bipolar may
often be misdiagnosed as ADHD (see links at the end of the TS Links page).
With the possible exception of OCD, these other
conditions have not been associated (genetically) with Tourette's; yet you will hear more from persons
with comorbid conditions because they may be having a much harder time with Tourette
Syndrome
than others. Tourette Syndrome plus comorbid diagnoses appears to be very different from Tourette's
uncomplicated by other diagnoses.
Back to Top

MedicationTourette syndrome experts advocate for the "judicious"
use of medication, only when tics or other behaviors significantly interfere
with functioning, and using the lowest dosage possible, not attempting to
completely eliminate tics. MOST people with Tourette's do
not need medication or choose not to use it because the side effects outweigh
the benefits, and today there are better
pharmacological options than the older neuroleptics.
But this is
often glossed over and we routinely hear of doctors who prescribe Haldol, Orap or Risperdal as the first medication for someone reporting adequate
social and academic functioning and little interference from tics !!
The overall
effect of these medications — both intended effects and side effects — can
be worse than tics, and if a doctor hands them out first, you may have the wrong
doctor. Often doctors seem to miss the point that knowledge
and understanding is all that is needed to help many people with Tourette
Syndrome. If there’s not an immediate crisis, a Tourette's diagnosis doesn’t mean you need to
start medication, so take time to learn as much as you can about your choices.
Changing the environment so that the tics are understood, are not a big deal and
the child is encouraged not to view himself or herself as "defective"
can make a difference. Also, children should have a say in whether or not
they want or feel the need for medication. At times, the parent may be
wanting to medicate a child who isn't worried as much about the tics as the
parent is !

"Because of the
understanding and hope that it provides, education is also the single most
important treatment modality that we have in TS."Peterson and Cohen,
The Treatment of Tourette's Syndrome: Multimodal, Developmental
Intervention. Presented at a closed symposium held in New Orleans,
Louisiana on April 12, 1996. No longer online at psychiatrist.com/psychosis/worldwide/current/tourettes.htm

"Rage" attackshave never been shown to be a part of Tourette Syndrome by any
research. However, in one preliminary study, "rage" has been correlated with the number
of diagnoses along with tic disorders (including mood and anxiety disorders, learning disabilities,
developmental delays, or
processing deficits) that one has. In other words, the more other diagnoses one
has, beyond tic disorders, the more likely is the behavior that has come to be referred to as
"rage." Furthermore, "rage" is often seen with bipolar
disorder (manic-depressive), depression, ADHD, and autism. Yet, even
though it is known that "rage" is not a symptom of Tourette's, we often hear the misnomer "Tourette's rage attacks."
Most persons with Tourette Syndrome do not have "rage." The Tourette International Consortium
(TIC) database shows a relative absence of anger-control
issues (in fact, the absence of most issues) in persons with Tourette's only.
Additionally, there is no such diagnostic entity as "rage." What has
come to be called "rage" may be a different entity for each person,
some "rage" may be due to other disorders or seizure activity, and it’s
not even clear that everyone who uses the term "rage attacks" is
referring to the same phenomenon. Ascertainment bias may explain why we
hear so often about "rage" and Tourette's — persons who experience
"rage" are more likely to have more diagnoses and more likely to come
to clinical attention and more likely to show up in support groups with
anger-related issues.

A BW HealthWire press release from from
BAYSIDE, N.Y. of Nov. 25, 1998 titled "Explosive
Anger Not Typical of Tourette Syndrome, New Research Reveals," stated that the "connection between TS and explosive
anger" is misunderstood. Based on a pilot study of rage attacks,
according to Ruth Bruun, M.D., the article stated that, "research so far
has demonstrated that ... rages are not specifically associated with TS.
However, there are children who have TS along with other disorders such as
obsessive-compulsive disorder, attention-deficit/hyperactivity disorder,
depression, etc. It appears that behavior problems such as those frequently
depicted in the media are more likely to be associated with having one or more
of these other disorders than with TS alone." In that article, Cathy
Budman, M.D. was quoted as saying, "If you see a range of symptoms in a
child with TS, you must look for other causes (i.e. comorbidities)."

CONCLUSIONS: These
findings provide additional evidence that aggressive behaviour
observed in children with TS may be associated with comorbid ADHD or
OCD (6), independent of tic severity or age. This is consistent with
the clinical observation that most TS patients have only minimal
symptoms, which do not interfere with their daily functioning.Aggressive behaviour in children with
Tourette syndrome and comorbid attention-deficit hyperactivity
disorder and obsessive-compulsive disorder.
Can J Psychiatry. 1999 Dec;44(10):1036-42. Stephens RJ, Sandor
P.

Persons with "rage" are advised to look beyond the tics of Tourette Syndrome for causes and
treatment, avoiding heartbreaking medication trial and error from the incorrect
assumption that these behaviors are coming from the Tourette's. Quicker assessment of
the comorbid conditions (such as mood disorders, autism, or other comorbid
conditions) that may be leading to "rage" will be helpful.
For example, the early detection and treatment of bipolar disorder can help
avoid a lot of medication trial and error, pain and heartache.

If you're new to Tourette Syndrome, you may be reading and/or hearing a lot about
"rage," and wondering how it applies to your child. (I remember
treading carefully
around my son when his Tourette's first surfaced, incorrectly assuming that all sorts of
behaviors would be forthcoming! Now I treat him like the regular guy that he
is.) Those parents
whose children have "rage" say you can’t miss it, and
literature is available online and in print to understand how to help with
"rage." (Ross Greene’s book, "The Explosive Child," is a
very helpful primer on effective, flexible parenting for chronically
explosive-inflexible children. He explains the issues which may contribute to explosive
and inflexible behavior and how good parenting techniques can help improve the
situation. "The Bipolar Child" by the Papolos explores the often-misdiagnosed condition of early childhood bipolar.)

Readers whose children with Tourette's syndrome do NOT seem to have "rage" shouldn’t
worry about it any more than any other issue. Parental anticipation or fear of uncontrollable
rage reactions can certainly lead
bright children to learn to manipulate their parents and may encourage behaviors
that should not be excused as neurological in origin. Those who question whether
certain behaviors are TS-related may be
looking at learned or manipulative or bad behavior. Assuming that uncontrollable
anger or other behaviors are part of Tourette Syndrome and can’t be helped is not going to
help that child learn to get on in life — ultimately, our most important goal
in raising any child.

(Just a note: this website was
designed for newcomers to Tourette's syndrome, to be read through in page order.
You can browse the pages in the order you desire, but if you're new to Tourette
syndrome,
you may get a better overview by reading through the pages in order, by clicking
on the Next Page links throughout.)